"Life on hold" - Neurodivergent people and healthcare experiences
West Yorkshire Voice, a network run by local Healthwatch that also covers Craven, invited feedback from people with experience of neurodivergence (including carers) to talk about healthcare and access, as well as assessments and support services.
As a Healthwatch whose sole pupose is to try make care better for everyone, we wanted to listen to what really matters - and what the challenges are.
What did our people tell us? - Read our report
What is neurodivergent?
The definition is (according to Oxford English Dictionary) “Differing in mental or neurological functioning from what is considered typical or normal.”
Neurodiversity is the wide variety of ways we think, learn, feel, and process information.
Most common types of neurodiversity include attention deficit hyperactivity disorder (ADHD), as well as dyslexia, dyspraxia, dyscalculia, and obsessive compulsive disorder (OCD).
It is estimated that around 1 in 7 people (more than 15%) in the UK have some kind of neuro difference (Source: Local Government Association).
How we listened
The West Yorkshire Health and Care Partnership, who work to improve the health and well-being of local people, held a meeting to discuss neurodiversity.
It brought people from across West Yorkshire and Craven together. These were health and care professionals and partners from education, local councils, community groups, the voluntary sector, and people with experience.
We were asked to a put together a summary of people's experiences.
What are the main issues people worry about?
People talked about the long waiting lists for attention deficit hyperactivity disorder (ADHD) and autism assessments, the problems this is causing, and how to do the best for all the people who need support.
What do our people want to see change?
- More professionals able to assess and streamline processes.
- Improved support for those waiting and alternative options for diagnosis.
- Investing in better support to reduce long-term costs.
- Enhanced staff training and accountability.
- Individualised support in schools for neurodivergent children.
- Listening to parents and carers and educating GPs on treatment options.
- Prioritising training for assessment providers and offering peer support while waiting.
- Tailored support for children and parenting courses on neurodivergent children.
- Utilising autism pre-screening tools to avoid unnecessary therapy sessions.
- Creating an app for diagnosis and support.
- Using a human rights equality approach and social model of disability.
What happens next
This report will help inform future work around neurodiversity across your area.
We will continue to listen to people and share what they tell us with decision-makers to make care better; in particular, improving assessments and healthcare services.
